Here is my guy, the beginning of my true story...
10/16/16 That is our balance beam struggle right now, as a couple and as individuals. How does one face illness with intention and integrity, allowing reality to be the daily guide in each 24 hours, day after day. How do we let a pity party in for a peek, but not make it a life? How do we live with that vulnerability? How do we embrace the fact that happiness is a moment-to-moment choice?
1/8/17 Yesterday was rough. Parkinson's is rough. Opinions can be rough. The biggest communication problem is we do not listen to understand. We listen to reply.
7/12/17 It is a counselor on paper; offering a place to share, a release of things that need to be said but not always easy because it allows the vulnerable in me to show. The word blog is actually a combination of two words: web and log. It is four concise letters; an accurate description is a log of thoughts published on the web. Over time web log just morphed into blog. This morphed word blog is an expression of my thoughts, the breathings of my heart.
7/19/17 I am proud of us for being proactive and giving away the sentimental trappings that often encases folks about where they live.
7/31/17 I have an opportunity when I see Parkinson's taking over Russ' body. I don't always grasp that in a difficult moment though. It's not a pretty disease to watch and I am absolutely certain that it is far above frustration for the person living in the body that no longer responds in any 'normal and controlled' way. It is in those difficult moments that I need that phrase "it sounds like an opportunity". So my mantra this week, this month, will be to twist my frustrations and fears and try (the operative word being try) to see an opportunity in the situation.
8/6/17 We have always said "we lived our retirement rather than worked to retire". Simply put, we took on jobs we felt good about, but they weren't huge money makers. We lived in a place that surrounded us with spectacular New England beauty and plentiful outdoor activity. We took time to travel during our working years and didn't wait until we retired. We ate dinner together every night. We were conservative spenders. We always had enough and were never in want, our needs always met.
8/7/17 Russell is truly amazing managing the loss of his mobility.
9/24/17 I am thinking that humility is knowing my limits, my strengths and my weaknesses. On this journey, I do tend to reflect inwardly. My car time is about processing the worries. Occasionally I leave the house in turmoil, worried, afraid, not knowing how to handle the immediate, never mind the future! On this journey there is always a person I meet that has 'just one more' issue than we are handling and it shouts at me.... it screams to me that their journey will someday be my journey. It humbles me and I feel blessed that they are there to teach me!
10/3/17 Presently I am in that space. The space between my feelings and Russ', the space between Russ giving Parkinson's every ounce of his attention and me giving it every ounce of my fear. We interpret it from distance places, but we both, in our own way, keep on...keeping on.
10/16/17 On the outside I walk around like everything is fine, all the while my sock is slipping off inside my shoe and giving me blisters. The inside layer is always there, just not always visible.
10/23/17 You 'feel' the shadow of him, but don't get to actually experience the old version of him because there is a new person in that body.
11/25/17 Russ is doing amazing things as his mobility catapults towards stillness. I seem to be avoiding being vulnerable and holding in my emotions until they spill over unexpectedly and uncontrollably.
12/4/17 Our life is altered, but we can still wake together each morning and have dinner at the dining table each evening.
1/6/18 Life has good moments of course, but living with a degenerative disease is not 'fine'. My new response when asked how I am, is "Goodish".
2/7/18 So many people have reached out through text, email, food and prayer... but there is heartbreak wrapped around all that goodness.
3/11/18 Life IS tenuous. Much of life is out of our control. Yet we continue to feel invincible. We avoid the reality of life being precarious, capricious and fragile. Most of us choose to overwork, keep stressfully busy and not believe that we have a finite amount of time on this earth and that we must prioritize. The inconvenient truth is that life is fragile.
4/19/18 A successful marriage requires falling in love many times, always with the same person
10/2/18 Surrender is difficult when your mind is in survival mode. Getting lost in the maze of frustration becomes fight or flight.
Living the life of a person affected with PD or the caregiver is tough. Until those words "You have Parkinson's disease", you have no clue of the impact. The support I have gained by our PD community is sheer love, grace, concern and hope. It is encouragement. With every new stage, new decline, new challenge, there is someone who has a story to pave the way for us. These are folks who motivate and encourage one another to exercise. We are family.